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Spina Bifida

I thought I would devote my second blog post ever to a subject that is near and dear to me. Many of you might have sensed that I had some sort of physical issue and been curious, but never asked. I have a birth defect called Spina Bifida (SB). In my case, it is a malformation of the spinal cord where the nerves around the spinal cord fail to connect to the right places. This results in muscle and nerve damage to the spine and spreads throughout the body. I am able to walk as a result of a couple of surgeries and by wearing short leg braces.

I use the words, in my case, because there are several different forms that SB can take; each differing in characteristics and severity. Along with the physical issues there are other things I have to deal with as well. SB patients, at least at the time I was born, typically have some sort of learning disability. For me, this made studying and school in general difficult, but not impossible. Having a teacher as a mom helped a lot as she was able to help me learn study habits that have helped me work all the way to a Masters degree.

An important part of this whole experience is the role of family and friends. I have been blessed with tremendously supportive family and friends who have helped me get to where I am by moral and financial support, thoughts and prayers. I am also fortunate to live an hour away from one of the best hospitals in the world for treating SB (Scottish Rite Children’s Hospital).

Part of writing this post was for it to be a kind of public service announcement. One of my goals is to spread the word about SB to make more people aware of it. I typically have not talked all that much about it. I’m trying to change that, but hopefully not in an obnoxious way. Please feel free to ask me any questions you might have about SB in general or my specific experience with it. As always, thanks for reading.

Thanks for sharing Niles. You always inspire me. I love that you are an advocate and how you are letting your voice be heard. Living with a disability in never easy, but kudos to you for turning adversity into something positive. You know i was born with optic nerve damage that left me legally blind and with epilepsy, so i can relate to you and this blog very much.

Hi Jim,
first of all, congratulations on deciding to write and lettling us in on it on this blog. 😉
I didn’t know about your SB, and I applaud your decision to be vocal about it, it certainly helps both those who are afflicted with a disability or disease and those who are not as well.
I look forward to learn more about you and what moves you, whatever that will be.

Thank you, Birgit. I’m excited to have this as a writing outlet now and I am definitely looking forward to seeing what will come of it. I have been comfortable for most of my life talking about Spina Bifida. People are curious and ask about it when they notice my braces or another sign of my SB. So I wanted to do this as a way that my friends who I don’t see every day could be aware.

Hi JIm, I’m happy to see you decided to write on whatever subject is dear (important) to your heart.
And thank you for being so honest, I think we all need a reminder to enjoy the life we had in spite of the difficulties the same life throws at us.
I admire your tenacity and bravery to overcome all the difficulties your problem caused you.
I might sound very egocentric now – I’m in the middle of writing my thesis for my Masters degree and your story certainly helped make me not view this as a major issue I should be anxious about. I should feel blessed I am in a position to be able to write it in the first place.
I’m very much looking forward to reading your posts (especially about wet shaving, I wasn’t aware it was a movement of sorts). 🙂